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"All Women, All Rights." International AIDS Conference in Mexico Calls for "Action Now"

By Rebecca Denison

December 2008

Thousands of AIDS activists marched for women's rights.
Thousands of AIDS activists marched for women's rights.
July 30, 2008: After a 5-year break from AIDS activism, I am on my way to the International AIDS Conference in Mexico. If you have internet access, you, too, can attend the AIDS conference "virtually" and for free at www.kaisernetwork.org and www.aids2008.org.

My plane makes a shaky landing in Mexico. After Customs, I am greeted by friendly volunteers. My taxi driver spends 20 minutes telling me how much he hates President Bush.

"Living 2008": A Pre-Conference for PWAs

At my hotel, 300 HIV-positive men and women from around the world are gathering for the "Living 2008" preconference. The organizers (GNP+, ICW, and their partners) have put together a well-planned agenda, to address four key areas of strategic focus:

  1. positive prevention,
  2. access to care, treatment and support,
  3. criminalization of transmission of HIV, and
  4. reproductive health rights.

"Evidence-based" is the new buzz word for those seeking to influence AIDS policy and funding. Personal stories aren't enough to convince funders and politicians. We have to figure out how to represent our experiences through statistics.

We receive drafts of position papers, and spend the next two days discussing these topics. People share stories of forced sterilization, lawsuits to advocate for their rights, strategies to get treatment to rural areas ... but there's not enough time to fully process the amazing range of challenges, ideas and experiences represented here.

A gay Mexican activist talks about how his mother saying she was proud of him on CNN gave him courage.

A 16-year old Australian woman, born with HIV, speaks words we will hear through the next 10 days: "Nothing about us, without us."

An HIV+ father from the Caribbean hopes to become his country's first openly positive politician. A Middle Eastern man is upset his region is not better represented. A Nigerian woman describes "coming out" at an international conference, when the HIV+ woman scheduled to speak couldn't come. Now she mentors new AIDS activists.

Jorge Saavedra tells us he lived in denial for the first 10 years of his diagnosis. But when treatment saved his life, he felt obliged to give back. Now he is openly HIV+, and Director of Mexico's National AIDS Program.

In the end, we reached consensus on some points, and not on others. The work goes on (www.Living2008.org).

Pediatric AIDS: The "Kids" Speak for Themselves

The babies born HIV+ over a decade ago, that the AIDS community has (and has not) advocated for, are now here to speak for themselves. My new friend, a 21-year old woman, tells me she attended 18 funerals of friends from her pediatric AIDS clinic in her junior year of high school. She asks for advice on how to make an impact as an AIDS activist with a voice of her own.

This is my dream, that "old-timers" will have the opportunity to support and mentor the "new-comers" who have passion, energy, and ideas of their own. And that the "new-comers" will value the lessons learned and sacrifices made by those who came before them. All of what we have today -- medications, laws to protect our rights, help paying for food/housing/bus fare, clinics where doctors and nurses specialize in treating HIV -- came about because people worked, and fought, to make them happen.

U.S. Lifts Travel Ban

While we are there we get the great news that the U.S. has removed the travel ban that prohibits people with HIV from entering the country from PEPFAR. There is joy, and confusion too, as activists explain that the results will not be immediate. It's a start.

Criminalization and Human Rights

When I went to conferences led by HIV+ people in the 1990s, the slogan was, "We are not the problem. We are the solution." This time, the focus was more on human rights and fears about criminalization of HIV. I heard about:

There was mention that prevention is a "shared responsibility", but it didn't have the conviction I used to hear. Was it because we were a gathering of men and women? Has treatment made us complacent? Uncomfortable and unsure, I held my tongue, afraid of being misunderstood. I have no answers, only questions ...

At the end of the day, I asked one of the male leaders if we could talk. Then I explained what I saw during my 14 years at WORLD. The vast majority of women who got HIV through sex were infected by men who knew they had HIV (or that they were at high risk). I talked about the women who learned their husbands were gay after they got married, or that what killed their husbands was AIDS (after they died). Of the women who met at a retreat and discovered they'd all been infected by the same guy, who told them all that they had infected him. I don't like the idea of locking up people with HIV. I fear that laws meant to stop those who recklessly infect others will be used against people who don't. But how do we make it stop?

A man jumped in, and told me, "It's the women's fault." Huh? If women would support their husbands to have the full sex lives they want, with as many partners as they wish, and with men, then men would have better self esteem, be more likely to use condoms, and be less likely to lie to us.

I was stunned, and happy. This is a conversation men and women need to have. He said women are trying to deprive men of their right to sex. I said I don't think a man's right to sex trumps a woman's right to live. He said it's not fair for women to expect a husband to be monogamous. I said that should depend on whether, upon marrying, they promised that they would be.

Discrimination Drives the Epidemic

He said discrimination against gay people drives the epidemic. I said, I agree! If gay people could be accepted and supported, as straight people are, then a lot of women (including me) wouldn't have gotten infected by gay men trying to be straight. We'd all be happier.

More people jumped into the conversation which was one of the richest I have had in 18 years. My transgender friend (born male, but now female) said, "I think I can honestly say I understand how both men and women feel in sexual situations," but the guy didn't catch on, and missed the opportunity for an even richer conversation.

In the end, I think we all agreed the world would be safer, and people would be happier, if women stuck up for gay men (and women) by speaking out against discrimination, and gay men stuck up for married women by practicing safer sex (at least with married men). I vow to fight Prop 8 in California, and feel reassured when I see an article, also opposing Prop 8, in the Huffington Post by the founder of the Straight Spouse Network (www.straightspouse.org).

Living 2008 ends with a huge party at a local museum. There are mariachi bands and lots of tequila. I think of all the women I know who are in recovery from drug and alcohol addiction. Ladies, make sure you have a sobriety plan in place before attending a conference away from home. Fortunately, there are buses to transport the rowdy revelers safely back to the hotel.

Strategies for Change

The Open Society Institute satellite, "Strategies for Change: Breaking Barriers to HIV Prevention, Treatment and Care for Women", introduces us to amazing women from around the world.

Esther Mwaura-Muiru, of GROOTS (Grassroots Organizations Operating Together in Sisterhood) in Kenya, says communities are disillusioned by international organizations that take large percentages of funding when grass roots women could do so much more with it.

Melissa Gira Grant, from Desiree Alliance, talks about St. James Infirmary, a health clinic run by sex workers, and the ideological struggles between those who believe sex work is legitimate employment and those who believe all sex work is based on exploitation. She says the stigma of sex work can be just as damaging as violence or exploitation.

Elena Reynaga, an advocate for sex worker rights in Argentina, tells us that gender violence laws don't protect women because sex workers are not seen as people, and many brothels are owned by judges, police and politicians. Elena didn't learn to read and write until a few years ago, at age 47, yet everyone can tell she's brilliant. When someone says, "We need women like Elena to go to college," she explains how life experience has already made her an expert in advocating for women in the judicial system.

Catherine Mumma, of the Kenya Ethical and Legal Issues Network on HIV/AIDS, says culture, not just laws, affect whether widows inherit their property. She has organized forums for communities to address the property rights of widows and orphans, even where laws fail to protect them.

Many say that even when good laws exist, people often don't know what their rights are. I learn about the Center for HIV Law and Policy in the U.S. (www.hivlawandpolicy.org).

The Global Village: A World Confronting AIDS

At the "big" conference, WORLD has a table at the "Global Village," an enormous tent city of booths and performance stages, built in the middle of a horse race track, and open to the public. Here, local Mexicans and people from around the world are gathering to share information and experiences. We talk to newly diagnosed Mexicans, activists from around the world, and the Girl Scouts at the booth next to us. (They are launching an international women and AIDS campaign!)

Behind us, people hold meetings in the Women's Networking Zone. There are also Networking Zones for people with HIV/AIDS, sex workers, indigenous people, youth, and more. From our booth we can see the main stage where there are rock concerts, transgender Nepalese dancers, and videos. Around the corner, crowds push into a tiny space to get haircuts from "Hairdressers fighting AIDS."

There is a booth where you can make anti-stigma cards. A sample shows a woman asking, "Would you invite me to dinner ... if you knew I had HIV?"

You could spend a week in the Global Village and not see it all. But there is more. A quarter-mile walk away is the 3-story Banamex building housing the official plenaries, workshops, posters, skills-building sessions, another exhibition hall, and the PWA lounge (a spa-like environment with free food and massages).

In retrospect, I should have spent more time in the PWA lounge, where I met the HIV+ woman who runs her national AIDS strategy program in Papau New Guinea. This is also where I met the HIV+ Australian man who shared how in his indigenous culture, gay men are very involved in raising the children, who later look after them in their old age. Every conference has it's "tracks" (treatment, prevention, etc.), but it's often the people I meet outside the workshops who teach me the most.

Where's the Treatment Info?

I am here for WORLD, but I am also hoping to find treatment information for myself. After living well with HIV for 25 years, I got sick last spring when my CD4+ count dropped below 350, the level at which treatment is recommended. Was it time to start meds? After two months I got better, and my T-cells went back over 400, so I don't know. I do know "Knowledge = Power," so I went looking for information.

Compared to past conferences, there was very little treatment information, other than presentations sponsored by pharmaceutical companies. Their info is often good, but I'm uncomfortable with the conference leaving treatment education to companies with a profit motive.

A Disease of Inflammation and Coagulation

I did learn that a 20-year old starting HAART today could expect to live 43 years. I also learned that HIV is a disease of inflammation and blood coagulation. Since these processes could contribute to other illnesses, such as heart disease, starting HIV meds earlier could reduce people's risk of these other illnesses.

Circumcision

Some studies of male circumcision showed it reduced the risk of HIV, and now WHO is rolling out circumcision programs. At the Women's networking Zone, there is a debate about whether this is a good or a terrible thing, based on risk factors for women.

Bill Clinton

Bill Clinton is speaking at the conference. Funny that I had to come to Mexico to see him for the first time. He speaks of accomplishments getting treatments to the developing world, and of challenges we still face. Outside, Housing Works has strung giant banners along the walkway calling attention to the plight of homeless people around the world.

Gender Based Violence

Many of the women here were infected by rape. But now, increasingly, those rape stories occur in settings where rape is a tool of war or political in-fighting. Women in Rwanda have campaigned to get access to HIV care for genocide rape survivors (www.we-actx.org).

What's Changed?

Perinatal transmission is preventable. At the South Africa conference in 2000, the fact that drugs and C-sections could dramatically reduce the risk of a baby being born positive was still "news." Now, most people seem to know this. Many HIV+ women here have had children or plan to. Despite this, I meet HIV+ women from three continents who can't have children, because they were forced to be sterilized after testing positive.

Treatment has reached some in the developing world. At these conferences, I always had to brace myself for all the women who had died since the last one. This time, I am surprised by how many survived. Dorothy from Kenya is a grandmother now. Kate from London is working at the U.N. Bev from Australia is mentoring the 16-year old activist who was infected at birth. Patricia from Argentina was nominated for a Nobel Peace Prize. Prudence from South Africa is working to address violence against women. Deborah from Tobago is the new Chair of the Global Network of People Living with HIV/AIDS (GNP+).

Some people in developing countries are now living longer, and some are struggling with drug side effects, like their American peers. Many workshops ask how we can "scale up" delivery of HIV treatment to reach more people around the world who are still in need.

Orphans -- By the time I get to the first plenary, I am suffering from information overload. We hear statistics, names of programs, urging to continue the fight. I agree with all of it, but feel numb, until we are told that by extending treatment to the developing world, we have prevented 2,000,000 infants and children from becoming orphans. It's not 2 million kids. It's one child spared ... who got to be raised by his or her own loving mother or father ... 2 million times. Tears are rolling down my face. I miss my girls.

There are new national networks, among them PozFemUK in England (www.positivelywomen.org.uk/pozfemuk.html), and the National Positive Women's Network in the U.S., facilitated by Naina Khanna from WORLD.

What Hasn't Changed?

What's not new is that more and more women are continuing to get HIV, and most of the factors that put them at risk haven't changed: violence, poverty, lack of information. I remember a workshop at the South Africa conference in 2000 called "Men drive the epidemic," in which an African woman said, "We have been looking for a politician, rock star, athlete ... someone who would be a positive role model for male sexual behavior, but have not been able to find one." Now we have one.

Barack Obama. Barack who shows the world that he loves and respects his wife. Barack who chose to be publicly tested, in Kenya and in New York City, to demonstrate in deeds (not just words) how we can take personal responsibility in this epidemic. Barack who spoke at Martin Luther King Jr's Ebenezer Baptist Church in February 2008 and said: "If we're honest with ourselves, we'll acknowledge that our own community has not always been true to King's vision of a beloved community. We have scorned our gay brothers and sisters instead of embracing them." Later, calling voters in Florida as a volunteer, strangers tell me, "I don't vote for black people." (More proof that we need him.)

Saddleback

Several years ago, I met Kay Warren, at an AIDS Conference in Los Angeles. Kay's husband Rick Warren is the pastor at Saddleback Church in Southern California, and author of the book, "The Purpose-driven Life". Kay was with a group of women from her church who were starting an AIDS ministry, and seeking to educate themselves. They were friendly, open, and warm. Living with HIV requires tremendous spiritual strength and courage, so I am devastated when churches preach that AIDS is God punishing us, and inspired when churches are welcoming and compassionate.

What they have done is amazing. Last year, Saddleback sent more volunteers abroad than the Peace Corps (over 7,000 members to 68 countries). Not only have they built their own AIDS ministry, they have also created an amazing array of training tools so that others can do the same.

Their slideshow wasn't long ... it was just 3 slides of maps of Western Rwanda (pop: 650,000) where they have concentrated their work:

  1. the 3 hospitals,
  2. the 26 clinics,
  3. the 726 churches.

In other words, where the government lacks the resources to effectively deliver HIV treatment to rural parts of the country, there is a church within a km. of every home. So they are proposing that in order to save lives, not only must churches mobilize volunteers to deliver care and compassion, they must deliver AIDS treatment. Rick Warren points out that 1/3 of the world's people belong to a faith community -- Christian, Muslim, Jewish, Buddhist, Hindu -- offering the possibility of a global mobilization to fight AIDS.

This idea thrills and terrifies me. Imagine the difference we could make in the fight against AIDS? But how would you prevent these churches from withholding care, or pushing their beliefs, onto people who do not share their particular faith? Pastor Rick reassures the skeptics, "We will do anything to save a life." Really?

A few weeks later, Pastor Rick urges his followers to vote yes on Prop 8, to take away the right of gay people to get married. Prop 8 passes, and I am devastated. How many more women and children will get infected by gay men who feel they must marry and pretend to be straight to be accepted and loved? I don't get it. The only gay person that ever hurt me was the one who was trying so hard to be straight.

My kids recently played the music, and sewed the brides maid's dress, for their friend's moms' wedding. (They had to wait 18 years for the right to get married.) My husband of 20 years and I had a wonderful time. Are they "unmarried" now? Why can't people just let them be happy?

Positive Women's Leadership

Activist speakers (l to r): Mony Pen, Sophie Dilmitis, Sylvia Petretti, Hilda Perez Vazquez, Kousalya Periasamy, and Tyler Crone.
Activist speakers (l to r): Mony Pen, Sophie Dilmitis, Sylvia Petretti, Hilda Perez Vazquez, Kousalya Periasamy, and Tyler Crone.
Positive women take the stage at the opening ceremony and in many workshops. When Hilda Esquivel of the Mexican Positive Women's Network speaks at a press conference, she arrives with some of the 100 HIV+ Mexican women attending the conference. They are sporting T-shirts that say, "nothing for us, without us" in Spanish.

"Women Take the Lead"

At a workshop, Kousalya Periasamy talks about starting the PWN+ India with four friends in 1998 and the challenges they face, including trying to reach members in 36 languages.

Sophie Dilmitis, World YWCA's HIV/AIDS Coordinator, and author of "If I kept it to myself," was diagnosed 9 years ago. She talks about the needs of young people to access information and support, urging participants to invite and mentor a young woman the next time they attend a meeting or conference.

Sylvia Petretti, 11 years positive, talks about starting PozFemUK, a network for positive women in the United Kingdom with support from Positively Women and ICW. Naina Khanna, from WORLD, talks about facilitating the new Positive Women's Network in the U.S.

Gracia Violetta Ross Quiroga, a Bolivian delegate to the UNAIDS Global Fund, spoke of being raped in 1998, diagnosed in 2000, and her boyfriend dying in 2003. She said rape impacts women, whether or not it is the source of their HIV infection. When she joined the Latin American Network of PWAs in 2003, she found herself the only woman with 20 gay men. Some were supportive, but not all, so her first battle was within the AIDS movement. Today, half are women, but she's concerned about women's representation on the UNAIDS board.

Anandi Yuvavaj, Asia-Pacific Island (API) regional coordinator for ICW, diagnosed in 1997, is an HIV counselor. She worries that most of her clients are men. Where are the spouses?

New U.S. Figures

Kevin Fenton, of the CDC, presented new U.S. figures to a packed room. He tells us that there were an estimated 56,300 new infections in 2006, with 27% female and 73% male. He says 31% were due to heterosexual transmission, and 53% due to men having sex with men. He talks, and talks, and talks about men, but says nothing about the 27% who were female. I wait. Surely, this public official charged with caring about all Americans will say something about women, but he doesn't. I can't stay.

Marching for Women's Rights

A crowd spills into the Zócalo for the Women's Rally.
A crowd spills into the Zócalo for the Women's Rally.
Despite the threat of rain, thousands of demonstrators pour into the streets of downtown Mexico for the Women's March behind the banner "All Women; All rights". There are women from all over the world, and men, and kids. The mood is festive as the crowd grows longer and longer, winding its way towards the plaza (El Zócalo) where we will listen to rock stars, movie stars, and women living with HIV. There are so many people I can't move for 20 minutes. Then it is over, the sky opens and begins to pour, and the crowd scatters for cover. I know we must become "evidence-based" to secure funding and laws to support people with HIV. But it is the feeling of solidarity there that I will bring home with me from Mexico.

Nov. 4, 8 PM : Obama!!

Barack Obama is going to be our next president! (He even won in Florida.) The walls shake as the friends and family packed into our tiny home cheer, and cry, and stare at the TV screen in disbelief. Never before have so many of my friends and family donated money, made phone calls, and traveled the country to knock on doors for a political candidate. I feel devastated that Barack's grandmother, my father, and so many of the HIV+ people I have known, did not live to see this day. And I feel grateful that so many of us did.

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